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I am writing this post in response to an article the Chicago Tribune posted yesterday entitled "Lyme Disease: A Dubious Diagnosis", by Patricia Callahan and Trine Tsouderos. I recommend you read the article first, to understand the perspective from which I write this post. I know this post is long, but I have a lot to say about this topic. I recommend reading part of it and then reading the rest later if you don't want to be overwhelmed. I just couldn't narrow it down anymore than I did.

The Tribune's article, in my opinion, is biased, uninformed, and a blow to the Lyme Disease community and the reputation of decent journalism. A little information and a lot of ignorance is a dangerous combination, and results in reporting such as this that does more damage than it does good. It undermines the real face of Lyme, and is a slap in the face all of us who have struggled to heal and overcome this disease. Determined to share a real experience of the effect of Lyme, a group of Lyme Disease community bloggers and I are posting responses to this article. We want nothing more than for the medical and journalistic community to lift the veil of ignorance, confusion, and misinformation surround Lyme Disease.

My issues with the article

First of all, I am proud to say that Dr. Bernard Raxlen, the psychiatrist featured prominently in the article, is my doctor. I do not appreciate the way that he is portrayed in this article. I have been under his care for 1 year, during which I have flown to New York twice and have had regular phone consultations with him and his staff. In the interim, I am under the care of Leslie Vilensky, a naturopath here in Minnesota that has trained with ILADS and works with many of Dr. Raxlen's patients. I will not deny that Raxlen's treatment protocol is rigorous. But the rigorous treatment gets results. I trust him, I am seeing improvement, and I know friends and acquaintances that credit him with their improved health.

Lyme Disease is hard to test for, an issue that the article rarely discusses. The borrelia bacteria burrow into the tissue of the body, especially in chronic cases. Since blood tests - even the best ones - only test blood and cannot detect the presence of bacteria in tissue, how can they be expected to accurately measure the presence of infection? They can't! Lyme must be a clinical diagnosis, determined from a combination of tests, symptoms, and health history. Medical professions need proper training, and need to be able to create a full picture of what Lyme looks like. In the same way that diagnosis must be a full picture, determining treatment length must be gauged similarly. The most important thing is to truly be able to listen to and asses the symptoms the patient is feeling. Our medical system needs to put more credence in our personal experiences. No one is as capable of telling me how I feel better than me. Only I can tell my doctor the symptoms that Lyme has caused, and the ways I'm feeling better since starting treatment. Sharing these personal experiences are vital for anyone dealing with Lyme, because testing is simply too unreliable. Unfortunately, most doctors do not know how to properly assess Lyme symptoms, and do not catch it, leaving people to suffer for years with no diagnosis or incorrect diagnoses.

The article completely and totally missed this as an issue, instead focusing on what they say is a prevalence of Lyme Disease overdiagnosis. The author warns readers against being unnecessarily treated for Lyme, making it sound like it would be a commonplace problem. Excuse me? The general consensus of my doctor, my naturopath, Lyme advocates and experts, and other patients is that Lyme is wildly underdiagnosed. Even the Lyme-conservative CDC and NIH admits to the fact that more people have Lyme than are properly diagnosed by the medical community. The chance that you will go to a doctor's office with symptoms and be incorrectly diagnosed with Lyme is far less likely a doctor missing your Lyme Disease and diagnosing you with something else. For example, my cousin suffered increasingly severe health problems for 15 years, seeing doctors all around the country. Eventually, she was treated for Multiple Sclerosis for almost a year, reacting negatively to the medications, until she finally found a doctor who told her that she has Lyme, not MS. I wish the article would have spent more time focusing on the real injustice: the lack of proper Lyme diagnosis.

Another issue that made my skin crawl was the article's portrayal of Lyme doctors - Dr. Raxlen included - as some kind of snake oil salesmen, pushing a wide variety of dangerous remedies on patients. While I do not doubt that such doctors exist in all fields of medicine, this portrayal is slanderous, inaccurate, and totally irresponsible. My experience with Dr. Raxlen has been nothing but exemplary. He has taken great care with selecting my medications, and I do not feel like he has been pushing pharmaceuticals on me like candy. In fact, he and his medical assistant encourage me to cut back, and it was me that told them I needed to stay on the full dose.

I wish this article would have allowed Lyme-literate and ILADS-trained physicians the opportunity to share their experiences with Chronic Lyme. These physicians often work on the fringes of the law. I do not deny that, nor do any of them. But what choice has our medical system left them? When they see patients in pain, desperately in need of treatment, are they supposed to turn the other cheek to save their own asses? Or abide by their Hippocratic oath and do what they feel is in the best interest of the patient? I don't know about you, but I rather have a doctor that is willing to stand up for the treatment they feel is right and one that will get results - even if that means it violates archaic and inappropriate laws. One of the reasons that it is so incredibly challenge to find a doctor that will treat Chronic Lyme Disease is because doctors don't want to risk their license and reputation. When searching for a physician, I was told by three separate doctors that they no longer take Lyme patients because they can't deal with the controversy and the immense amount of workload necessary to properly treat Lyme, nor do they want to run the risk of persecution. Doctors that do treat properly often fly under the radar, their identity only being shared through word of mouth, private messaging on Lyme message boards, or ILADS doctor searches. The fact that these brave doctors have been forced to meet such humiliating review of their practices indicates that the IDSA-recommended treatment for Lyme Disease needs serious re-evaluation. Research must be done, and the law must be changed, or this epidemic will continue to spin out of control and doctors will be forced to act like criminals.

Additionally, I feel that the treatment protocol of Lyme Disease doctors pales in comparison to the larger problem of over-prescribing pharmaceuticals and unnecessary treatments by the larger medical community. Children are given ADD medications, everyone seems to be on an antidepressant or mood stabilizer, and half the commercials on television are for a prescription for something or another. Doctors prescribe surgeries for gallbladder removal, full hysterectomies, spinal surgeries, and other invasive, severe procedures rather than focusing on gentle cures that get to the root of the issue. No one can honestly tell me that doctors treating Lyme patients with long-term antibiotics and prescribing other appropriate medications is the downfall of the prescription medical system.

Additionally, the article references studies that are admittedly flawed and out-of-date. There are no sources listed, which is disappointing given the claims made in the article.

My Lyme Story

I am not a doctor or a researche, but I am experienced with Lyme Disease. Why? Because I have it. People I love have it. I've felt what it can do. Nothing is more powerful than personal testimony. My symptoms and story are unique, as is the story of every Lyme patient. Our varied experiences show that this disease is complex; it is not as simple as the article in the Chicago Tribune, most doctors, or conventional wisdom suggests.

Instead of severe onset of acute symptoms that left me debilitated immediately, my illness progressed slowly, gradually working its way into every single system of my body. I experienced a wide range of symptoms, from neurological to endocrine to digestive to reproductive and everything in between. This slow onset of symptoms allowed me to always make some excuse for how I felt - maybe I didn't sleep enough or was stressed out. Perhaps I was coming down with a cold, or drank to much the night before, or had a bad reaction to this or that. I could somehow justify it. Additionally, the slow onset allowed me time to get used to things and accomodate. You can get used to anything. I used to think it was totally normal to have a constant sinus infection, horrible stomach pain, and shifting joint pain. Not until the symptoms made me incapable of functioning in 2008 did I realize that I had a really serious problem.

I have picked more ticks off myself than I care to count. I spent every summer in the Northwoods of Wisconsin. Ticks were commonplace, we'd find them partially embedded and pick them off like it was no big deal. We walked outside barefoot, and would play in the woods and lay in deer beds we would find in the brush (no kidding). I went to rustic summer camps, sleeping in tents and playing in tall grass. I was a healthy, active, high-energy, and intelligent kid. I didn't get ear infections or suffer from frequent colds. Things were great.

However, after returning from summer camp when I was 8, something changed. I came down with what the doctors called mononucleosis. I started having severe neck and back pain, missing school. I started having knee pain, forcing me to quit the soccer team. My seasonal allergies began to flare, and I suffered intense sinus infections and colds. My ears rang. My right tonsil became consistently inflamed (it has been swollen persistently ever since). I started developing sensitivites to fragrances and chemicals, which only became worse with age.

In middle school, continuing knee pain forced me to begin physical therapy. That same year, I threw out my back getting out of the shower. I started having serious struggles with depression. In high school, I developed severe acne, eczema, and had troubled digestion. I carried around a bottle of Maalox constantly, and suffered from cramps. In college I started noticing occasional dyslexic issues my freshman year, and continued to suffer with recurring bouts of depression and anxiety. I started developing food allergies, and frequently got rashes around my eyes, mouth, and neck. There were times I couldn't eat without severe stomach and intestinal pain, had freqeuent diarrhea, and actually went to the emergency room for abdominal discomfort. I developed an epic ear infection that lasted 1 month and left me with increased ringing in my ears and constant ear pain, and regularly had sinus infections that would last for months on end. While studying abroad, I became so ill I nearly passed out on a bus in Italy. That "cold" lasted for three months, and then I got the flu.

All of this makes it sound like my childhood and college life was awful. It wasn't - it was quite the opposite, actually. I always excelled in classes, graduating magna cum laude in college and being inducted to Phi Beta Kappa. I had a loving relationship and a busy social life. I participated in lots of college extracurriculars and had a great job with the art department. I learned to live with all of these symptoms. They weren't debilitating, I just kept on going.

After college, all these symptoms continued to amplify. I suffered such severe back pain in 2004 and 2005 that I was going to a chiropractor upwards of three times a week and was in constant pain. I thought that diet and exercise would help; I started eating meat again and began working out. I lost weight and my pain was better, and I managed to complete two triathlons, working through all those symptoms.

Then, in 2006 I believe I was reinfected; I developed a large rash on my leg after a weekend at a cabin. I never saw a tick, but my crazy rash continued to grow and become painful. After seeing three doctors, using countless creams, and feeling flu-like, tired, feverish, and achy, all the doctors could give me as an explanation is a spontaneous skin infection. I didn't believe them. They gave me steriods and eventually the rash went away.

Even though the rash was gone, other things began to happen. My once-consistent menstrual cycle became irregular. My body pain increased, my allergies continued to snowball, I continued struggling with depression. I started acting out in uncharacteristic ways, behaving irratically and losing site of the consequences of some of my actions. I became obsessive, going to the gym constantly and counting my calories and fat grams and journaling food. I was tired and fatiuged, and was uncharacteristically spacy and forgetful. I felt angry toward my friends, experiencing jealousy and frustration over even small things. I started taking naps before going out at night. My digestive pain was unbearable, I frequently felt flu-like, and suffered terrible headaches. My vision went haywire and I saw floaters constantly. I had frequent diarrhea, which sometimes forced me to go to the bathroom 3-4 times per hour. I suffered chronic bacterial vaginitis. I had numbness in my feet and toes, and my heart started palpitating. I noticed I was losing dexterity, and stopped playing accordion and viola because I was having a hard time getting my fingers to work the way they should. At times, it was even hard to write my name - as an artist, this was a marked, scary thing. My balance was bad, I became sensitive to light, and my chemical sensitivities shot through the roof. My food allergy reactions were worse, and I was constantly swelling and getting rashes. My period stopped in March of 2008. I started losing weight rapidly, even though I had stopped going to gym entirely. My limbs felt heavy and I felt weak; going up stairs felt like I was climbing a mountain. I lost about 60 pounds in 5 months. I was literally starving; my body had stopped absorbing nutrients. I couldn't function normally, and I was terrified.

I made countless trips to my GP, desperate for help. Because all my bloodwork, endoscopies, CT scans, and general exams were all relatively unremarkable, she told me I was healthy and that I needed to calm down and stop worrying so much. I could take an anti-depressant if I wanted, and I should drink less caffeine. She actually congratulated me on finally shedding the extra weight (did she not see my jutting collarbones?). She told me my chronic bacterial vaginitis was just the way my body was, and that I should wear more cotton underwear. She told me my diarrhea was because I used to run a lot and had a case of "runner's diarrhea". She put me on a heartburn medication and told me that would clear up my digestive pain. I left her office feeling crushed, heartbroken, and absolutely helpless.

Needless to say, I never went back to her office again.

I started trying to take matters in to my own hands. I changed my diet. I started reading and researching. There were days I was so tired and in pain I could hardly go to work, but I did, because I didn't know any other option. My limbs felt heavy, my brain wasn't functioning properly, and I felt like I was dead and completely empty inside. Even in the dead of summer, I was freezing cold. One day I was driving home from the co-op, distracted and totally spaced out, and I rear-ended a car. I was hysterical and felt like my life was in shambles. My friend picked me up from the accident, and helped me realize that I needed support. That accident was the best thing that ever could have happened - it opened my eyes to how scary and painful my life had become. I started seeing a naturopath and an acupuncturist, and my life began to change. They listened to me, believed everything I said I felt inside, and showed sincere care and dedication to helping me uncover what was going on.

My care providers and I worked to heal my gut, deal with my Candida, address my food allergies, deal with my pain, and support my immune system. My digestion improved and I started gaining back weight. But I still suffered so many symptoms; my pain became searingly bad, and I felt like someone was blowing a balloon up inside my head. I became even spacier, leaving things everywhere, forgetting words, and performing badly at work. I knew there was something else going on. My cousin had been recently diagnosed with Lyme Disease after 15 years of mysterious health issues, and she started encouraging me to get tested. I was so resistant to getting that test done; over and over I said, "I don't have Lyme!" to my family. But the more I read about Lyme, I saw a picture of myself.

I finally gave in, and I decidedI wanted get tested. When I approached my new GP about a test, she refused to test me. She told me my joint pain wasn't "bad enough", and she couldn't get over the fact that I never saw a tick, or that my rash years prior didn't look like a bullseye. She told me it couldn't be Lyme. My naturopath was more supportive, and she arranged to get me tested through IGenex. On November 2, 2009 I got my test results: I have Lyme Disease. I started seeing a new naturopath and an LLMD. I started a whole new batch of pills, sometimes around 40/day. I take maximum doses of three oral antibiotics, as well a slew of other pharmaceutical and botanical medicines and nutritional supplements and probiotics. Over the last year, I've had massive ups and downs. At first, I felt awful. I experience bad Herxheimer reactions, acute anxiety attacks, night sweats, nightmares, non-stop chills, and fevers. I was dizzy and lightheaded and kept running in to stuff.

After 21 days on antibiotics, the length of treatment suggested by the IDSA, I wrote this blog post. You may find it interesting. One thing is certain: I was not "cured" after 21 days, and I don't know how anyone with a chronic infection possibly could be. I am still on antibiotics, and will be for an indefinite amount of time, as are many of the other brave individuals in the Lyme Disease community.

Slowly, my body regulated. I worked to support my lymphatic system and kept with my regimen. And slowly but surely, I noticed improvements. My friends and loved ones noted how much better I seemed. My doctor and naturopath were pleased with my progress. And now, over a year after diagnosis, I feel like I am starting to get my life back.

My journey isn't over; I have a lot more treatment to go. I tried reducing my dose a few months ago and was met with a flare up in symptoms that left me calling in sick to work and spending days in my rocking chair. now on a full dose again, I have indefinitely postponed my plans to go to grad school in Portland, and am focusing on completing my personal healing journey. I don't know how much longer I need treatment; my symptoms and test results will determine when the time is right. This unknown factor bothers me, I hate not knowing "when" I'll be "better". So I try to live in the now, and appreciate all the blessings I have. I'm a Lyme warrior, and I will get through this. Compared to many Lyme Disease patients, my symptoms are relatively moderate, and I am worlds more functional than many of my Lymie friends. I feel fortunate everyday for whatever stroke of luck has allowed me to heal in the ways that I have.

Where's the Proof?

There is no proof more powerful than personal experience. I don't need numbers or test results to show me how things I have gotten better. You've heard my story, and here's how things have improved since starting long-term treatment.

Would I have reached this point without long-term antibiotics and Lyme-fighting homeopathics? I don't think so. Before I started treatment, I was doing everything "right" to be a "healthy" person. An average indivudal would have felt fucking fantastic with my lifestyle, and I felt miserable. I ate an organic, whole foods diet, took a boatload of supplements and tinctures, had a wonderful support system, tried my best to incorporate gentle exercise and stretching, and received regular care from a chiropractor, a naturopath, and an acupuncturist to address a multitude of issues. Despite all this, I was still sick, still suffering increasingly severe symptoms, and wasn't getting a whole lot better. It wasn't until I was diagnosed and started treatment with Dr. Raxlen and Dr. Vilensky that my health finally started turning the corner.

On that note, keep in mind that I do not make the cut for CDC. According to their ultra-conservative diagnosis guidelines, I do not have Lyme Disease and my test results are borderline negative. Additionally, according to the "research" presented in the article, the symptoms I had belong to an illness that doesn't exist, and the treatment I've used with great success is "dangerous" and "unproven".

This article completely undermines the experience of all of us who are healing from Chronic Lyme, and is an absolutely unacceptable piece of so-called journalism.

Stories from the Lyme Community

In an effort to tell the true story of Lyme, many of us in the blogging community are sharing our stores and voices. Please see these blogger's posts, and read their stories. We all have had different journeys, but we all share in the same fight.

I speak on behalf of many of us in the blogging community by saying that we feel the best way to discuss this issue is coming from a rational place, not one of outright rage and irrational communication. I urge your to share your stories, leave comments on the Tribune's articles, or email the article authors directly (the email addresses are available at the end of the article). If you have written a response to this article, please leave a link in the comments section of this post.

Reader Comments (10)

Great post! My only known tick bite was at summer camp when I was 10. I too had bizarre, minimally intrusive symptoms throughout my childhood and college, and it wasn't until I had my son that I became very acutely sick. We wonder if I had Lyme all along.

My story is up at:http://lemonandlyme.blogspot.com/2010/12/my-lyme-disease-is-not-idsa-lyme.html

An incredible post and powerful testimony! I found your site because the recipes and information presented here are how I have to eat due to multiple food intolerances of an unknown origin. The "-free" list on your sidebar sums up the foods I stay away from. I was so very pleased to discover a place where I can find recipes and information about foods I *can* eat.

Reading up about your Lyme Disease story has been secondary for me, but something of increasing interest to me, too, as I have gotten to know your story through reading your posts. I have to say your being open about Lyme Disease in your life has started my thinking on my own health and life thinking, "Could this be one of the reasons why I am the way I am?" Your posts on Lyme have raised my awareness of the health issue.

I love your response to the article in the Tribune, and want to shout, "You rock!" for taking a stand in this way. I am SO SICK, figuratively, but now that I think about it, kind of literally, too, about skeptics who think they are erring on the side of science and reason, not really knowing the fullness of people's health experiences, thinking somehow that people with chronic, debilitating health issues are hypochondriacs reaching for any diagnosis they can. It infuriates me. I know I have had health issues of an unknown origin for years. Like you, I've had to take matters into my own hands to address them. I wish it were not so. I applaud professionals like Dr. Bernard Raxlen who are also taking a stand to really try to help people. I agree with you: there will always be frauds out there who will take advantage of people. But there are also true heroes (in my book) who are walking on the edges of traditional medicine, knowing that it is inadequate to treat people who have chronic health issues in the ways medicine has for the past century. People with chronic health issues are not adequately addressed in the mainstream medical community today. The ones who are working on these edges are pioneers, brave and courageous. I can only hope that perhaps one day I can work with one of these people to find increased wellness in my life, too.

In the meantime, though, I will handle things as best I can on my own. No one knows my own body better than I do, and I do feel empowered with the tools available to me to take control of my own health. Thanks to your site, I now have more tools.

Bravo to you, Dr. Bernard Raxlen, and all of the people who are taking a stand in regards to the shallow article the Tribune has published.

Thank you for sharing your story and a link to this awful tribune article.I left a comment there but I didn't see it go up so I'm adding it here:

**Here's eight words you NEVER want to hear..."The Infectious Disease doctor will see you now"

Don't walk, run away from these folks.This is what they do to infants born with common food allergies - all for the lack of a probiotic and some goats milk you must read: http://www.cure4jack.org/Cliff's%20Notes.htm

... at the opposite end of this (trail of blood) spectrum is my favorite website to read cutting edge science on bacteriality that autoimmune patients with chronic and late stage Lyme disease claim is taking 40 years off their life as they 'heal' with the smallest amount of a pulsed antibiotic.

The ANY-autoimmune disease code has been cracked wide open, don't be late to the party!

http://www.marshallprotocol.com/ **

I would like to add that long term antibiotics are frowned on by corporate run medical societies like IDSA because they use less harmful old school antibiotics that work like rochephin - the MP uses minocycline.Old school drugs mean old school prices and hey why are you rejecting this shiny, new, (former chemotherapy agent) expensive drug dejour?...how dare you get better!

Thanks to you I've been able to more fully grasp my food allergies without feeling like I've been "banned for life from the banquet table.' Thanks again for all you do here.

Kim, I really appreciate you taking the time to write this out. I know how physically and emotionally draining it can be to share your story, but we draw strength from hearing about your victories. I'm scared to get tested, but this reminds me that I should look into it again. Thank you so much.

You know how much I hate to hear all that you've been through. It's literally maddening to read about these doctors that miss Lyme Disease over and over again. But your story shows what great strength of character and perseverance you have. You've always kept going no matter what obstacle was in front of you. I'm so glad the Lyme community brought us together even if I wish neither of us ever had to experience Lyme. And I'm still blown away by all the things you've been able to accomplish while in treatment for Lyme! Keep kicking butt, and you know I'm always keeping you in my prayers that you'll feel better than ever someday soon.

kim, thanks so much for your site. i read your Lyme info. a year ago when i first got diagnosed with Lyme and couldn't get off the couch. A friend recommended your site, it was there i read about Dr. Leslie Vilenski, got excellent treatment through her and after 5 months of symptoms, I am Lyme free. I was one of the lucky ones who has an amazing MD, Dr. Kara Parker who took me seriously and believed me at the first visit and then supported me in working with Dr. Vilenski. It is imperative to work with people who believe you and aren't afraid to be aggressive with treatment. Thanks for all you are doing, I am also gluten free and love your recipes and I am a psychotherapist and regularly refer clients to your site as well, healthy nutrition is so important when suffering from depression/anxiety..

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xo

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